negative ttg ab, marsh 1 biopsy

[amlong73]

My  15 year old daughter while on a normal gluten diet had a ttg ab test of 1. Her immunoglobulin a was 160. She had a biopsy done, and was confirmed to have Marsh 1. Dr diagnosed her with celiac disease. She was having symptoms of acid reflux, stomach aches, nausea and diarrhea. None of these symptoms improved on a gluten free diet. Her ttg-ab test 4 months later was still a 1. She was finally diagnosed with a low functioning gallbladder and will have surgery to remove. I still question her celiac diagnosis, and was wondering if it was to soon to say she has celiac. Dr. still says a marsh 1 is celiac. Is she correct? 

[cyclinglady]

Maybe your daughter is like me.  I never test positive to the TTG tests and I had a non-functioning gallbladder.  How non-functioning (percentage)?    What was her HIDA scan?  I ask because I think if my celiac disease was diagnosed sooner, I might have been able to save my gallbladder.  Mine was at 0% and was infected.  But I suffered starting at age 16.  I would have annual attacks.  And then my GB would work just fine until one year, it just stopped working. It caused me a lot of problems for about six months.   Just a non-medical theory, so talk to your GI.  I know she went gluten free, but the diet has a very steep learning curve.  It is why most celiacs report taking a year or longer to heal.  Even though in theory the GI tract can heal fast, but we certainly do not live in a bubble.  
 

Know that some celiacs are seronegative.  Your daughter could be one of them.  I test positive to only the DGP IgA test.  Had them all, many times.  Why?  None of my doctors know.  My research shows this can occur in the very young and the very old.  Doctors use the TTG because it catches most celiacs, but not all and it saves money......😕

Marsh Stage 1?  Correct?  That is because a pathologist reviewed those tissues and her GI concurs.  She can have both celiac disease and a non-functioning gallbladder — like me!  
 

 

Edited September 4, 2020 by cyclinglady

[Scott Adams]

If I were you I would get a genetic test done on her to see if she carries the genes necessary for her to have celiac disease. A negative blood test with a mild positive biopsy would also leave me with many questions.